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Migraine preventatives

(40 Posts)
RollerCola Mon 14-Jan-13 16:41:29

I've seen a neurologist about my migraines who has written to my gp with a suggested management plan. She has suggested a couple of different drugs to try as a preventative & I wondered if anyone has had any experience of them.

Firstly I've stopped (as much as poss) taking all non-prescribed painkillers as I was taking too much which was causing re-bound headaches. I'm trying to limit my sumatriptan to only bad attacks & I've stopped drinking caffeine as advised.

She has suggested either Topiramate (anticonvulsant) up to 50-75 mg or Pregabalin 75-150mg (not sure what this is but dh takes it for nerve pain)

I have previously tried Propranolol (beta blockers) & Amitriptyline but neither helped.

Has anyone tried these and did they work? If so what were the side effects?

Many thanks for any advice, I feel like I'm going mad as these headaches have gone on for years now. I just want them to go away sad

QueenOfCats Mon 14-Jan-13 16:53:01

Hi smile

I have suffered migraines since I was 12 - I'm 33 now.

I've tried all sorts, including propranolol, low dose antidepressants etc.

I'm currently on Topiramate - it's changed my life!!

I haven't had a migraine for over 3 months. For me, this is unheard of. The last time I had 3 months migraine free must have been when I was 10!

I'm currently on 25mg of Topiramate and this seems a good dose for me, so I'm sticking at it.

Please give it a go - I hope you do and that you get the same results as me!

The side effects are scary - but I have had slight tingling in hands and feet on and off, slight change in taste - cant detect the carbonation in fizzy drinks and I've lost almost a stone, which I'm thrilled with!

The only thing is, it's vey important not to get pregnant whilst you're on it as it can cause birth defect - cleft lip and palate being a common one.

RollerCola Mon 14-Jan-13 18:21:41

Thanks so much, that's good to know. Like you I've suffered for years, although they've only been unbearable in the last 3 or so. I'm 38 & definitely won't be having any more children so that's not a problem.

Do you get any headaches at all now? I tend to get a very dull ache on the days between bad attacks so it never really goes away atm, just some days are easier than others.

I'll definitely give it a try if the gp says I can. Thanks grin

QueenOfCats Mon 14-Jan-13 18:36:53

I have had niggly headaches - in the 3 months I've had 3 - around the time my period is due. But they are gone within 45 minutes of taking 2 paracetamol, which never ever touched my migraines.

All in all I'm really pleased. I did put off taking them for 2 months after they were prescribed due to the list of side effects, but once I visited a few dedicated migraine forums, it seems that side effects are far more likely on far higher doses than are used for prophylaxis of migraine.

FarelyKnuts Mon 14-Jan-13 19:11:55

I am on Topiramate as well. 100mg a day. Also changed my life! Down to about 2 a year now compared to nearly every day.

Iceaddict Mon 14-Jan-13 19:20:57

Hang on. There's a preventative? i take rizatriptan for My migraines they are mainly hormonal, can you take preventative for that? Sorry I know I've butted in wink

orangepudding Mon 14-Jan-13 19:25:15

I'm butting in too!

How often do you get migraines? I'd been getting them for the last couple of years infrequently. In the past 6 months or so I get one every couple of weeks. Should I see a GP or carry on self managing?

RollerCola Mon 14-Jan-13 19:47:10

If you get a lot (not sure how many's classed as a 'lot' but I'm getting at least 8-10 a month) you should look at taking some kind of preventative rather than just treating the headaches as you get them.

I take sumatriptan for the actual migraines but it seems that too much of that can also cause rebound headaches so I've been told to take it only when I know it's a bad attack.

RollerCola Mon 14-Jan-13 19:49:43

Is weight loss a common side effect of topiramate? While I wouldn't mind losing half a stone or so I'm not sure I need to lose loads, I weigh 9st9 at 5'3.

QueenOfCats Mon 14-Jan-13 20:09:53

I was getting lots - and I was loosing the day after the migraine too - in total I was losing almost 3 months a year to migraines and the after effects.

orangepudding Mon 14-Jan-13 20:20:06

Gosh, I really feel for you both. With only two or so a month I don't need a preventative.

Thanks for answering.

RollerCola Mon 14-Jan-13 20:31:14

Which migraine forums did you look at queenofcats ? I'd quite like to have a nosey. Mine are hormonal, so not sure if giving up caffeine will make much difference but I've been advised to so I will.

QueenOfCats Mon 14-Jan-13 21:31:17

Roller - cant remember! I just googled topiramate migraine or topamax migraine and found and read through forums that came up.

QueenOfCats Mon 14-Jan-13 21:32:19

Also yes, weight loss is a common side effect. Again I think it's more pronounced the higher the dose you are on and the heavier you are.

Iceaddict Mon 14-Jan-13 22:05:22

I'm getting roughly one a week the odd week I don't get one 2 will be hormonal ovulation and premenstral. Often the premenstral one will last 3 days and I take at least 2 wafers. The others are probably tired/stressed. Thanks for posting this I've just taken my last wafer on fri and my last script said to see doc before ordering more. I'm going to get An appt tomorrow. I'm on phentermine for weightless at the moment so googled whether it'd be safe to take with the drugs somebody mentioned and its actually ok to take together and promotes weightloss which is an added bonus. I've got a stone to lose aswell. Thanks everyone for the info grin

QueenOfCats Mon 14-Jan-13 22:14:53

Iceaddict - topiramate is mainly used as an anti-epileptic. But it has other off licence uses too, one being weightloss. Many people are prescribed it for weightloss alone!

If you google topamax weightloss you will get some info on it.

Iceaddict Mon 14-Jan-13 22:20:52

Thanks I'm doing good on the weightless anyway so wouldnt go on it just for that but it would be a bonus may help hormone levels to I think.

shitmagnet Tue 15-Jan-13 11:10:14

I was averaging one a fortnight (classic, with aura) and a weird episode with vestibular migraine (lasted a few weeks). I started supplementing with Mg, and have NOT HAD ONE since, around 6mo now. I also avoid MSG which is a known trigger for me. Good luck!

RollerCola Tue 15-Jan-13 19:57:26

Does anyone know if it makes any difference as to the effectiveness of topiramate if migraines are hormonal?

alto1 Tue 15-Jan-13 20:15:51

I don't know how people can manage with two a month, let alone more. Mine are only every few months on propranolol and valproate. It's not worth my taking topiramate - but when they break through, they come in series so I can lose up to five days.

Can anyone point me towards the best migraine forums? My online life is fairly limited but I would like to get on top of this.

TIA

RollerCola Fri 18-Jan-13 19:15:09

A quick update, I saw the dr yesterday and she's given me the Topiramate. I've to take 25mg every other night for 2 weeks, then every night, then 50mg.

The list of side effects is VERY long and I'm quite nervous about taking them. The main ones I'm worried about are feeling dopey & the eye pressure (I have a family history of glaucoma) The dr only mentioned pins & needles and drowsiness.

I took the first one last night & so far so good. No weird effects today and no headache grin. Hoping it lasts!

QueenOfCats Fri 18-Jan-13 19:26:02

Well done roller! smile

Really hope they work for you!

The eye thing I would try not to worry about. More common at higher doses and becomes apparent quite soon after starting the tablets.

I felt a bit dopey for a couple of days after starting mine - but nothing too bad. Or that anyone else noticed. I did seem to struggle to find certain words on occasion but that passed completely after a few weeks.

I started on 25mg every evening for 2 weeks then added 25mg in the mornings too - I didn't feel right do dropped back down to 25mg at night only and that's fine for me.

Don't aim for a particular dosage. If I remember correctly, there's no evidence that a daily dose of over 200mg is effective for migraines.
You have to find the dosage that gives you the most relief and then stick there.

Good luck!! grin

RollerCola Fri 18-Jan-13 20:14:37

Thanks, she said I could go up to 75mg if I needed to but I'm hoping that the lower dose will work. It may just be wishful thinking but my head feels quite 'clear' today. Most days even if I don't have a headache I get a dullness that never really goes away. Fingers crossed.

QueenOfCats Fri 18-Jan-13 20:21:11

Everything crossed for you!

Keep us posted grin

Iceaddict Mon 21-Jan-13 10:49:55

Hiya, don't know if anyone will see this now but just managed to see doc. Got rizatriptan wafers for migraine same as usual. But he said to try pizotifen. It's an antihistamine or antiseretonin agent. As my migraines are linked to hormones, I'm to take four days leading to ovulation or period up to 2 days past the danger time.

Asked about other drugs mentioned here but he wants me to try this first as there are far fewer side effects.

May still get odd stress/tiredness/alcohol related ones which I can take wafers for. Will report back if anyone wants to know

DoubleLifeIsALifeHalved Mon 21-Jan-13 19:31:08

ooh this is interesting, if anyone's still around can you tell me more about Topiramate? Can you take it with a whole host of other drugs - Fentanyl, Amiltriptaline low dose and venaflaxine?

am just taking sumatriptan like they are sweets and can't get my gp to think any further about the migraines as i have another condition too, hence all the pain killers, so she doesn't want to prescribe anything more. Not terribly helpful as when I've seen a pain consultant he said the GP should really be addressing the migraines... I have about 1 a week at a minimum, and its hideous living like this.

Just butting in to say that Pizotifen is good, but it is also an appetite enhancer. My ds is 10 and takes 5ml of pizotifen nightly, and has put a lot of weight on.

The doc wants to put it up to 20ml as ds is still getting migraines, but I am worried about him putting more weight on, so we are going to leave and wait and see for now.

15ml, not 5ml

LadyKinbote Mon 21-Jan-13 19:45:28

<writes down Topiramate and makes note to see the doctor>

Mine have been terrible lately, 10+ a month. I've never had any luck with preventative treatments but will give this one a go!

Iceaddict Wed 23-Jan-13 11:26:04

Double, your go should be doing more. Pain killers are rubbish for migraine. I know sumatriptan is for migraine but have they discussed rizatriptan with you. If you can't have a preventative then surely rizatriptan would be better as you take one on the onset of a migraine and its gone within the hour. For me it is anyway. Only prob is I feel foggy and tired for a few hrs but its better than the pain.

Iceaddict Wed 23-Jan-13 11:40:56

Nutcracker, my doc advised 1mg pizotifen before bed for around 6 days when I think the hormones are kicking in. I've not tried them yet, I'm going to monitor my cycle and get it spot on for the best chance of it working. My leaflet advises maximum of 4.5mg a day for adults so its a low dose in also taking phentermine so hoping this will counteract the tiredness and weight issue.

Has your GP identified your sons triggers? Maybe you could try what I'm doing and take the higher dose but only during the time it's likely to happen. (Completely not sure about this but maybe an idea)

Sorry your son has migraine hmm how unfair. Poor thing, growing up is tough as it is

Iceaddict - UNfortunatly, my ds's migraines are pretty random. We've never managed to identify a food trigger at all. The only things that I knew can trigger one is anxiety, hot weather, over exctiement and too much screen time.

I tried lowering the dose in the last summer hols but they started back up again with avengance.

DoubleLifeIsALifeHalved Wed 23-Jan-13 20:32:44

I tried rizatriptan once a while ago & for the first time I took it it was amazing BUT then my migraines came back with a vengeance & the rizatriptan didn't touch them. I don't know why & I wasn't offered anything else so begged to be put back on sumatriptan ... Which they give in packets of 6 and I get through those in about 5 days. Argh!

RollerCola Wed 23-Jan-13 23:11:21

Well I've been taking Topiramate 25mg on alternate nights since last Thurs & after initially being scared to death of the list of side effects, have had none at all! Not even the pins & needles or funny food taste that most people mention.

Up until today I had no headaches either. I got one this afternoon but it was my own fault for not eating properly. It's early days but at least I've not been landed with the side effects straight away. I'm going to up to every night soon & see how I go.

Mamuss Wed 23-Jan-13 23:19:20

I was prescribed pizotifen after getting a migraine every other day. I took 5 weeks to settle into my system and I had maybe 2 or 3 migraines in a year. I did put on 2.5 stone though! In a year! I've now weaned myself off them and have had 2 migraines since September, and the weight is falling off. I'd highly recommend it for the migraines if you can be very cautious about what you eat!

QueenOfCats Sun 03-Feb-13 23:39:50

Hi Roller - just wondering how you're getting on?

Have you increased you dose yet? How are you finding being on the medication?

Anyone else giving it a go? If so, let us know how you're getting on too smile

RollerCola Thu 14-Feb-13 18:42:38

Hi, sorry queen I've only just seen your post. An update - I've been taking Topiramate for exactly 4 weeks now, including the end of one period and now one new period and it's been like a miracle for me.

I've only had to take one sumatriptan in all that time, and that was in the first week. I've taken no other painkillers at all. I've been taking 25mg daily up until this week when I started to feel a bit headachey in the week leading up to my period so I upped to 50mg. The side effects have been nothing more than pins & needles in my hands & a strange taste to fizzy drinks.

So all in all a great success grin

IceAddict Sat 16-Feb-13 00:25:26

Hi, so glad its working for you roller, i just want to say thanks for starting this thread! Without it i wouldn't have gone docs for preventative treatment, since starting pizotifen intermittently at the danger times, i havent had a single migraine. Ive been taking half the dose to see if i get results with fewer side effects. The only thing i have noticed is the odd visual disturbance which was really not much at all and an odd heavy head feeling at times I'd normally have pain. Could be psychological though! Overall I'm made up so thanks for the advice I've had even though i didn't post it grinthanks

RollerCola Sat 16-Feb-13 09:13:08

That's great Ice I'm so glad you've found something that helps as well. It's such a huge relief, I can't believe the difference it's made to my life. I would urge anyone who has regular headaches & migraines to push for a preventative - it seems they really do exist & work.

DoubleLifeIsALifeHalved Thu 07-Mar-13 11:54:25

oh how annoying, just went to gp to ask them to reassess the sumatriptan and all she did was take me OFF the pill and said they have to try that before trying anything else, even though i did say that I'd had the migraines far longer than i'd been on the pill, which I only went back on in the summer.

I'm sure its all true but ffs, why wont anyone do something about the migraines themselves? Grrrrrr.

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